These days, girls with Cystic Fibrosis call themselves cysters and boys with the disease are known as fibros. This cracks me up but it’s awesome. I grew up in a mostly solitary fight against Cystic Fibrosis but these days with the internet and social media there is a great and easily accessible community of CFers out there. If I was growing up today I’d likely join in. I’ll save the whys of my solitary route for another time but today I want to discuss two dramatic portrayals of CFers, one a cyster and one a fibro.
Spunky Cyster with Low Lungage
I recently watched the first season of Bates Motel on Netflix streaming. I’m not into horror movies and had little interest in Psycho or this prequel that imagines Norman Bates as a high schooler — but I am interested in one of the characters: Emma.
Emma is 17 years old, has Cystic Fibrosis, and walks around with an oxygen hose in her nose and a portable oxygen tank on wheels pulled behind her. She is said to be waiting for a lung transplant. Reading up on the series it sounds like they added CF as a character quirk and do not plan on getting too involved with it. Or do they? Maybe Norman falls for Emma, she dies, and that is the final straw in his growing insanity. She is being set up as the girl we want him to end up with. And she seems to be his last morsel of moral compass. (Mama Bates is nearly as psycho as Norman.) So if he loses Emma — both the love of his life and his moral compass? Trouble at the Bates Motel.
The portrayal of a CFer is wildly inaccurate at times. I was afraid she was going to roll through the entire season without coughing but finally in episode three, on a hike, she breathes heavily and coughs. Later in the season she has a more realistic cough session. However, you can’t have a character coughing all the time on a TV show. I understand that so I’ll give them a pass. But throw in a cough here and there people.
A CFer on oxygen and on the transplant list would not be able to run around town and school as effortlessly as Emma does. Needing to use oxygen during the day indicates her lung capacity (let’s call it lungage) has dropped to about one third or below. Usually being on the transplant list means one’s lungage is even lower than that. And low lungage means one’s body cannot get enough oxygen to the body for it to function. It is not just a matter of being exhausted, like someone at the end of a 10K race. Runners still have high oxygen saturations at the end of races.
So it is hard to imagine her taking the aforementioned hike, which must have been several miles into the forest to a hidden pot field. To make it more ridiculous, at the end of the hike Emma sprints away from the bad guys with her oxygen tank in hand. I’m at 27% lungage and I’m on oxygen and it takes minutes to recover from climbing one flight of stairs. There is a time delay though. I could run up those stairs. I could sprint. But three seconds into it my body would go into catastrophic failure. It’s more than being out of breath. The body urges collapse. The lungs strain for oxygen. The mind rejects all sensory input and shouts, “THE END IS NIGH!” I imagine it’s a lot like drowning.
Olivia Cooke, the actress who plays Emma, was asked if she researched CF for the role. She said, “I watched a lot of documentaries.” And she said CF is, “called the disease of the beautiful people. From the outside, you wouldn’t think there was anything wrong with them.” And of CFers, “You think there’s nothing wrong with them, apart from when they go home, they have to take lots of medications and do lots of exercises.” She adds, “I never wanted to play too much on her disease” because “she’s such an intelligent, spunky character that I would never want to play too much on the CF and take anything away from her.”
In short, I’m a beautiful person! But I think you can usually tell something is physically wrong with a CFer. Mainly because of the coughing. It is a deep nasty cough and usually phlegm comes up (and is hopefully spit out). Or, often the CFer is underweight due to bad digestion. This is probably less true today with improved CF therapies. Meaning young CFers are looking healthier than ever.
But I’m not complaining too much about Emma. I’m glad there is a CF character (and a very likable one). And I appreciate Olivia Cooke’s idea that she doesn’t want CF to dominate the character. That was at the core of my solitary approach to having CF as a kid. But less sprinting and a few more coughs. And get her a better portable oxygen set-up. Hauling those wheeled oxygen carts around is a pain in the ass.
Fibro Tired of Hot Babes Hitting on Him
I also recently watched a movie called Foreverland, written and directed by Canadian fibro Max McGuire. It’s a solid road trip movie about a fibro and his friend’s cute sister. The friend was a fibro and has died. Their mission is to deliver the deceased fibro’s ashes to a sacred spring across the country. The fibro lead looked really familiar and this was bugging me until I realized he was the actor who plays Norman’s brother in Bates Motel, Max Thieriot.
Max does a good job of playing a CFer with some good deep coughing. He should give Olivia Cooke some tips. But my favorite scene is when he gives a presentation to some medical students and a hot woman med student hits on him. He rebuffs her like it’s a big hassle to have babes constantly hitting on him. This has not been my experience with CF! It made me wonder if this has been a genuine problem for the writer-director or if this is some wishful writing. I knew things were getting better for CFers — but this much better???